Introduction: According to statistics, more than 10 million people worldwide suffer from Crohn's disease or ulcerative colitis. These two diseases, collectively known as inflammatory bowel disease (IBD), mainly affect the digestive system, causing inflammatory, ulcerated, and bleeding intestinal tissues. In severe cases, intestinal obstruction, perforation, and even cancer may occur.
Although IBD can be temporarily controlled by medication and surgery, there is no clear cause and curable treatment.
Gong Jianfeng, chief physician of the Department of General Surgery of the Eastern Theater General Hospital, believes that combined with the trend of younger onset, IBD patients may face greater pressure than tumor patients: "seizures, remission, seizures, remission, surgery, seizures... Many patients fall into this cycle for the rest of their lives."
May 19 is World Inflammatory Bowel Disease Day, and several doctors tell us the stories of clinical encounters.
Lao Chen, who lives in Gansu, raised four children, and his family was very difficult. Since his diagnosis of Crohn's disease, Chen has undergone two surgeries and is still in an parenteral stoma. However, recently, Lao Chen discussed with Gong Jianfeng to put the ostomy back in the bag, because having an ostomy affects the work, and "I haven't saved money in the past year."
Even the money for the recent medical treatment was only collected by Lao Chen through various channels to borrow money, and even to borrow usury. Borrow 10,000 yuan, and pay back 3,600 a year.
Lao Chen asked Gong Jianfeng what good way to do it, but Gong Jianfeng also felt that there was no best of both worlds, "What I can do is to save a little bit on the cost of treatment as much as possible."
Previously, Gong Jianfeng met a patient with ulcerative colitis, who was already in a very serious condition, and could not do total colectomy because of a lack of 10,000 yuan. If his family didn't help him raise money, he had to go to various emergency rooms, and as soon as he stepped out of this hospital, he stepped into that hospital.
Although Gong Jianfeng has repeatedly told the patient that "you can open the operation first, and then make up the operation fee later", the patient finally decided not to have the operation because of this 10,000 yuan.
For IBD patients, poverty is also a condition that destroys the patient's life like a sharp blade, and also stabs the patient himself. "I don't know what the final outcome of that patient is, but the choice under financial pressure is easy to bring bad results."
The cost of treatment itself is only one aspect, and there are more and more complex practical factors that determine whether surgery can be performed or not.
Among IBD patients, there are many who resist surgery. Among IBD patients, there is even a group of patients called "swear not to do surgery".
IBD surgery is generally a long time course, and in the process, a series of problems will come with the derailed life.
At the Eastern Theater General Hospital, where Gong Jianfeng worked, there were many patients who came to Nanjing from the far north for temporary ostomy. Because IBD patients need to do nutritional support before and after surgery, they need three months of recuperation time before and after surgery, which adds up to half a year.
After the temporary stoma is installed, it has to be removed, and some patients simply do not go home for a year, waiting in line for surgery while doing nutritional support. This, combined with the need for an escort, means that two people in a family need to be shut down for a year.
Yu Rui (pseudonym), who has actively undergone an operation, explained why she refused the second operation and mentioned that she would worry that this operation would make her life unknown again. For her, her quality of life is much better than before the first operation, and the rhythm is within her control, but if she has another operation, the order of life may be disturbed again.
The emergence of the "sworn not to do surgery" conveys an identity among patients, and Yu Rui guesses that it may be "a group of people who know they can't do it to cheer each other up".
Because patients are not only patients, but also social people, there are too many things to worry about together to promote their helpless choice.
Xiao Wang, who suffered from colitis, has progressed to the point where the entire large intestine needs to be surgically removed. However, because there was evidence that this operation may have a certain impact on male fertility, the woman's family firmly objected, telling the doctor that there were only two choices: "First, take medicine, do not open surgery, and preserve fertility." Second, if you want to open the operation. Bye bye, let's find another one."
Many times, patients do not directly tell the doctor what they really think, they can only see through careful observation.
Jie Zhao is the project manager of the Love in Extended Inflammatory Bowel Disease Foundation (CCCF), a non-profit foundation that specializes in helping IBD patients, and is also an IBD patient. She still remembers a woman who was in tears in the emergency room. The woman came from a rural village in Henan Province and came to the emergency room with a perforation and needed an immediate ostomy surgery. However, even if further delay may lead to sepsis, doctors take turns to persuade, but to no avail. The woman gritted her teeth and said that she insisted on not doing surgery for anything.
When she was helpless, Zhao Jie looked at the husband of the woman who had been standing silently at the end of the bed, and suddenly thought of something. She called her husband out of the hospital room and made it clear to him that he had to choose between the danger to his wife's life and the ostomy operation, and that there was no possibility of sudden improvement.
The man remained silent. It wasn't until Zhao Jie asked him if he would be unable to accept his wife who had undergone surgery that he shook his head slightly. Zhao Jie forced him to persuade the woman to operate, and the woman finally nodded in agreement.
It is necessary to convince the patient that the disease can be cured
Among IBD patients, there are many patients who develop mental diseases such as anxiety after learning that they have developed the disease, and this depression, anxious psychological state and the course of IBD will affect each other.
TaniaH. A review article published by Bisgaard et al. in Nature Reviews Gastroenterology and Hepatology in 2022 pointed out that depression and anxiety are common comorbidities of IBD, and three systematic reviews of meta-analyses on the prevalence of depression and anxiety in adult IBD patients have been published, but all are based on heterogeneity samples from the available literature.
Three literature suggests that the probability of comorbid depressive symptoms in IBD patients is 21%, 21.6%, and 25.2%, respectively, and the probability of comorbid anxiety symptoms is 19.1%, 35.1%, and 32.1%, respectively.
Gu Yubei, deputy chief physician of the Department of Gastroenterology of Ruijin Hospital affiliated to Shanghai Jiao Tong University School of Medicine, once received a university teacher, and the patient did not have any expectations for the treatment of the disease: "I am Crohn's disease, I have read a lot of books, I also know this problem, if it can't be cured, I just come over to dispense a medicine."
Gu Yubei listened cooperatively, but then flipped through his medical record book, but found that the truth was completely the opposite, this patient had not been properly treated for this disease, and many effective drugs had not been used.
According to research, the association between IBD and anxiety and depression is bidirectional, and patients can easily feel hopeless and feel that the disease cannot be cured. "This view is actually the most in need of correction. More than 90% of patients can achieve their ideal state through active intervention and treatment, and their symptoms can be relieved."
Pictured: Gu Yubei examines a patient with heavy bleeding from Crohn's disease
Lao Zhao, who lives in Shangrao, Jiangxi, is a ride-hailing driver who has a relatively poor life on weekdays. Perhaps because of this, Old Zhao came to Shanghai with reverence to see a doctor. To this end, he specially prepared the best things in the house and wanted to give to Gu Yubei - two bottles of rapeseed oil squeezed in his home. "Once he came to my office sadly and said he had forgotten the canola oil on the high-speed train. I said it was okay, but he felt sad because he wanted to bring it to me."
Gu Yubei feels that it is necessary to make patients believe that they can be cured, and the second is to try to find a way to treat. "He said he was in bad condition, and I said it didn't matter. He said there was no place to go online, there was no place to inject biologics, and I said it didn't matter."
Gu Yubei said to Lao Zhao, "You take medicine, just take cheap azathioprine, this medicine is also very effective for most patients, and there may be adverse reactions in the long run, but it doesn't matter if we monitor together."
Old Zhao accepted Gu Yubei's suggestion. Even if you have some difficulties, you can find an effective treatment. After taking the drug for a year, his intestinal lesions improved tremendously.
Gu Yubei has always adhered to the concept that poverty can also cure diseases, or in other words, poor people must cure diseases, so that patients can have production capacity and have the opportunity to change to better treatment methods.
Doctors who get together to correct the "scam"
However, patients like Lao Zhao who can get an effective treatment plan and follow it are still a minority.
In China, about half of patients do not have an attending physician (a specialist who knows IBD), and more than 40% of patients need to travel 100 kilometers away to reach the nearest IBD center. Even today, when medical conditions have greatly improved, IBD specialists are still scarce, and this scarcity is even more pronounced in primary hospitals.
In the face of a more mixed information environment, patients are prone to fall into suspicions that consume unnecessary energy. With their thick medical records, they searched for all the doctors they could reach, repeatedly consulted different enterologists, and only then could they breathe until they got the most unanimous answers.
Gu Yubei described such a person as "like doing an exam paper, and you have to get all ten experts to pass before you can accept a treatment plan."
The patient is the doctor's best mirror. Sometimes, patient feedback is a hardcore prompt and rhetorical question: Do we really see the patient's difficulties?
Anxiety, confusion, and not knowing where to ask for help can also lead to deception. Scammers who want to profit from patients' anxiety spread all kinds of health care product information on the Internet, and even disguise themselves as patients and sneak into the group of patients.
Some tricks are smarter and less detectable. They applied the shell of the SCD diet (Specific Carbohydrate Diet), an intestinal therapy shell, to try to create an atmosphere in which inflammatory bowel disease can be cured through so-called reasonable diet and certain supplements without injections and medications.
This statement caters to the mentality of many patients, and some patients who believe it will even stop taking the drug on their own, which will lead to the recurrence or exacerbation of the disease.
This deception sometimes happens between real patients as well. Gu Yubei once found in the hospital that "some patients are seriously injecting biological agents over there, but tell other patients that they have no treatment, but what home remedies they eat."
9 years ago, Gu Yubei went to the United States to study and found many foundations or organizations related to diseases. At that time, many disease-related doctor-patient education was almost blank.
She realized that poor information is a wall, the first barrier to patient visits.
After returning to China, she heard by chance about what Dr. Chen Yan of the Second Affiliated Hospital of Zhejiang University School of Medicine was going to do: set up a foundation belonging to IBD, later known as the Love in Prolonging Inflammatory Bowel Disease Foundation (CCCF).
CCCF was born to improve the medical care and quality of life of patients with inflammatory bowel disease (IBD) with the idea that "education is the best medicine".
Taking eating as an example, CCCF launched the "Safe Food Kitchen" IBD patient diet care program, which invites professional dietitians to give lectures and produce recipes for patients to help IBD patients in remission enrich dietary choices, balance diet and maintain good nutritional status.
One thing doctors agree on is that "not knowing is not scary", and what is scary is being exposed to some wrong information that hinders making the right treatment decisions. So, they are also playing the role of correcting the scam by coming together.
Education is necessary even for those who already know a lot.
One of the patients that Gong Jianfeng once received was a doctor in the Department of Gastroenterology. However, this makes communication between them more difficult. Both internal and surgical departments have their own set of theories, which has become an obstacle to mutual understanding.
During a ward round, Gong Jianfeng spent nearly half an hour discussing the matter with the physician: "If he could have received some knowledge about surgery earlier, the treatment would be much easier."
Photo: Patient's "thank you letter" to Gong Jianfeng
Secretly donate 1 million patients
A half-hour communication is often not enough to bridge the information gap. For lifelong diseases such as IBD, doctors need to do not treat once or twice, but "management throughout the life cycle".
Gu Yubei feels that the existence of non-governmental organizations like CCCF is like the glue between everyone.
Outside of treatment, patients will compare and joke with each other, and their circle of friends is proud of drying hot pot, showing off the hot pot they ate today, and commenting that they will eat next time. Sometimes when she sees such a circle of friends, Gu Yubei will comment below: "I saw it too!" (Joke tone, reminding the patient that the doctor is also monitoring the patient's diet management)
Some patients will find a suitable doctor through the IBD medical resource map provided by CCCF, and Gu Yubei, as a CCCF certified doctor, has received many patients from this.
One day, Gu Yubei, who was busy, suddenly received a call from CCCF, and a photo came from the opposite side, asking if Gu Yubei remembered the patient.
Over the years of medical practice, Gu Yubei has contacted countless patients, and he didn't think about it for a while. But she looked at it carefully, flashed her spirit, and asked if this person was Zhang Rui (pseudonym). This is one of her patients who found her through CCCF four years ago, and Gu Yubei helped him refer to the right doctor based on his condition. Later, Zhang Rui left Shanghai because of work scheduling, and specially greeted Gu Yubei before leaving.
CCCF told Gu Yubei that Zhang Rui donated 1 million to the foundation. This startled Gu Yubei.
At the CCCF's annual meeting last year, Gu Yubei told the story of Zhang Rui's donation. As a doctor and a member of the CCCF, she was surprised and needed to think hard about how to put the money to good use.
Coincidentally, Zhang Rui was also on the scene on this day. When Gu Yubei was telling on stage, he sat downstage and sent Gu Yubei a long WeChat. This is also the first time Gu Yubei has heard Zhang Rui's story.
Before the illness, Zhang Rui's situation was not bad, but the illness made him lose his labor force, lose his job, and his family's savings were almost exhausted because of medical treatment, and he broke up with his girlfriend for some reason. The hammer of life is like a downpour, and each blow hits the sore spot of the disease.
Later, he found CCCF, found Gu Yubei, found a suitable doctor, and later was treated by Dr. Chen Yan, one of the founders of CCCF, in Hangzhou. While the disease is gradually brought under control, the motivation for life is reshaped again.
Today's Zhang Rui has not forgotten the dilemma he faced at the beginning. That was his past and the reality that countless IBD patients are facing.
Gu Yubei, who saw this, was very moved. When Zhang Rui found her, she didn't know anything, she only knew that she was looking at an ordinary patient, just like facing countless patients.
"But at this moment, I think, how to say it," Gu Yubei thought for a while. "You treat every ordinary patient with your heart, you don't know how you will change his life, and how he might change the future of this disease."
Special thanks: Gong Jianfeng, chief physician of the Department of General Surgery, Eastern Theater General Hospital of the Chinese People's Liberation Army, and Gu Yubei, deputy chief physician of the Department of Gastroenterology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine
Curator: Carollero | Executive Producer: Gyouza
Title image, illustration, poster source: CCCF courtesy
The author of this article: chestnut
Resources:
[1] CCCF-Zhejiang Love in the Prolonging Inflammatory Bowel Disease Foundation http://www.cccf4u.org.cn/index.html
[2] Lilac Garden Previous Article: Relieve dozens of stools in half a day: the life of being pocketed after total colectomy
[3] Bisgaard,T. H., Allin, K. H., Keefer, L., Ananthakrishnan, A. N., & Jess, T. (2022). Depression and anxiety in inflammatory bowel disease: Epidemiology, mechanisms and treatment. Nature Reviews Gastroenterology & Hepatology, 19(11), 717–726. https://doi.org/10.1038/s41575-022-00634-6
[4] CCCF: An Investigation of Economic Stress and Access to Healthcare Resources in Patients with Inflammatory Bowel Disease in China: A Questionnaire-Based Study